Everything I know about being a parent to a child with down syndrome….. (Mom took over!)


Here it is:

”          “

I don’t know anything about being a parent to a child with down syndrome. I can’t tell you about parenting: a son with a lazy eye, a daughter with my sarcasm or a son who is an open nerve. BUT…..I do know…..

Beyond food, shelter and clothing, children need love, understanding, patience and guidance. It’s a parent’s job to help their children reach their full potential. Whatever that may be.

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Stuffing and Stuff


I know you missed me. I’m sorry.

We took a break for the stuffy-stuff holidays. You know….the day to stuff your face and then all the stuff that comes after you stuff your face to celebrate getting stuff. And I’m really scared of Fridays now. At least one of them. I didn’t know we had a crazy shopper day. Some traditions are really silly. Mommy and daddy kept me home safe.

Well….You didn’t miss too much.

Here I am taking a pre-nap before I eat my Thanksgiving meal. It must have helped because I was moving fire after I ate. I think mommy called it “hell on wheels”. Whatever!

T1

Then I went outside to play with my shadow.

T2

Then I talked to a tree.

T3

Then I played football with my brother. I let him think he tackled me.

T4

Moving on to some Christmas decorating. I’m helping my sister with the tree. See me making that wood garland dance?  I should be a snake charmer.

C1

Okay……Maybe I’m not exactly helping her.

C2

Yeah….I didn’t like where she put that.

C3

Oh my goodness. Are you seeing these powers?

Look at that throw. Look at the garland standing up in the air. I really need to go to Vegas and have my own show.

C4

Looks like it’s back to the business of decorating. She’s so serious.

C5

Wait! Is she judging me? I can feel her eyes on me. Clearly she’s close-minded. Garland can go vertical.

C6

Look at that. Almost perfect.

C7

Oh good. There’s more. I don’t want this spot to look bare.

C8

So……Sorry if you missed me. I’m still in school. I don’t see myself dropping out yet. I still eat, drink, sleep, poop and wreak havoc on my family. But….you might not be seeing my handsome face every day or even every other day. Times are getting crazy and between you and me…I think my mommy is becoming a slacker. Seriously….She stays home….How busy can she be?

Where The Wild Things Are (Halloween: Day 32)


I will tell you where they are. They are in my living room, dressed like lions and dancing in circles with girls dressed as fairy princess ballerina something or others.

lion1

They are scary and fierce, especially when they get on their laptops. They may be sending spam, chain letters or worse than that…….boring status updates on Facebook.

lion2

Sometimes, they take off their fur and hide among the regular folks.

“What? You’ve never seen the spoon on the nose trick? I’m not allowed to improvise?”

lion3

BE AWARE: DON’T FEED THE ANIMALS!

It’s my party and I’ll cry if I want to.


And that’s just what I did for the first hour or so. I guess I just wasn’t in a partying mood.

BD1

But then, there was cake. That wife of mine is eyeing what I’ve got. I’m sorry, but I’m not giving her what’s on my plate. We’re married after all, not dating.

BD3

Speaking of cake……check this out.

2013-10-23 3rd Birthday and Day After

TOP: 1st Birthday Cake –Amazing

BOTTOM LEFT: 2nd Birthday Cake – Also Amazing

BOTTOM RIGHT: This year’s birthday cake – POOPIE!

I guess three years doesn’t mean much around here. BUT….Maybe I shouldn’t let mommy and daddy hear me complain since I was the only one of us four kids who even got a party this year. That’s right. No great parent of the year awards being handed out here. Oh well. My brothers and sister seemed to be happy with some kind of paper they got. I think it’s called money. I don’t know why. I got toys.

I said “WOW” with every present I opened. I didn’t even care what was inside.

BD4

See this mess. This is my Thomas The Train set I got last night. Guess what? It still looks like this because daddy can’t figure out how to put it together. Mommy asked if he read the directions. Why would a mommy ever ask a daddy something like that?

BD5

Gotta go! I don’t know when I’ll be back up here. Mommy gets her other foot cut and stitched up tomorrow. I think she’s going to be on those pills again. They make her either drowsy-loopy mommy or mean-impatient mommy.

BE AWARE: I’ll be back!

I’ve got BIRTHDAY fever!


Like….No joke. I really have the fever. Well, not anymore, but I did yesterday, so I missed school and played hooky again today. Talk about a great way to spend your birthday. No school and chilling with my shows and my pets.

Oh yeah….mommy and daddy were home too.

Anyway. I’M 3 YEARS OLD TODAY!

This is how it all began.

Justice Sonogram

Then I decided not to be a dark and brooding artist. I came into the light.

52502_1491524580083_2247834_o[1]

Here’s me at my first birthday celebration.

BD!

Here I am at the second birthday. I look a lot cooler.

BD2

You’ll have to wait until tomorrow to see tonight’s pictures.

Besides, I’m napping right now and cannot be disturbed.

BE AWARE: I age well.  

Cheers At Church


This is me…..today…..after church.

Church

I went on stage with my class (2/3-year-olds) and we sang a song and held up signs. Okay….I didn’t hold up any of the signs and I didn’t sing the words, but I did do some other things.

What I did do:

  • I stood up on stage with my class. No one held me or my hand.
  • I didn’t get scared with everyone watching me.
  • I didn’t cry when the kid beside me started to wail.
  • I didn’t sing the words, but I moved my lips. I think that’s what most people do on stage.

 

In the end…..everyone cheered and clapped.  

 

BE AWARE: I am a performer. BUT….You probably knew that.

 

It’s Monday? Where’d the weekend go?


I’ll tell you where it went…..to pieces. It was picked up by a tornado called “My Parents” and tossed around like a rag doll. I’ll try to lay some of the scraps out for you. I was able to rescue a few moments with things you should be aware of.

Friday night: I was playing Peekaboo with a STRANGER while waiting in line at a department store my mommy and daddy took me too.

BE AWARE: I play games and interact with the human race.

FRIDAY

Saturday: That was a pretty big day for me. It was our Fall Festival parade and I was on a float for Special Olympics. I’m in the back sitting on mommy’s lap.

BE AWARE: I’m an athlete.

I’ll be a Young Athlete for Special Olympics until I’m eight-years-old. Then…..I can compete in stuff.

LOOK! We have a big torch and everything.

Float

I didn’t think we should throw candy without testing it first.

BE AWARE: I care about public safety.

Lollipop

BE AWARE: I learn stuff.

Sunday: Mommy drew a circle on the left. She did okay, but a little messy.

My circle is on the right. I think mine is just as good. I even added some extra stuff just because.

SUNDAY

Today (PreK/Day 21): Here I am this morning, checking the safety of the tunnel before my train goes through.

BE AWARE: I can get away with not wearing a shirt.

Day 20 Train

Now…..I am getting ready for school. I was pretty late (1.5 hours).

Someone, this friend I know…….Yeah that’s it, woke me up a few times during the night. They made me jump around, throw stuff out of my crib and kick the rails. This happened a few times. Mommy let me sleep in.

BE AWARE: I try to figure things out for myself, like putting on my “special shoes”. OR….Playing with the Velcro straps because it’s cool to do that.

Day 20 Shoe

Down Syndrome Awareness Month: My Hiney!


I have down syndrome and this is awareness month

….blah…blah…blah.

Here I am, being selfish and talking about me, me, me.

Pretty big stuff is going on this month. 

 I’ve got to make some calls. October is going to be busy.

First things first:

Get some stamps.

Order some pizza.

Eat American cheese!

 

OCTOBER

Month-long observances:

Cultural celebrations:
Health observances
Culinary observances:
  • National Pizza Month
  • National Popcorn Poppin’ Month
  • National Pork Month (United States)
  • National Sausage Month
  • American Cheese month